)
Fuel for the Journey

By Lin Mouat

 

 

Living With Unseen Disabilities

 

 

My mother was afflicted by polio when she was seven. As a result she was paralyzed - her right arm was paralyzed, shriveled and her hand fixed in one position.

 

Many people Mom met didn't seem to even notice her disability. She worked hard to find ways to use that paralyzed arm and hand.

 

Like my Mom, most stroke survivors also work hard to overcome the affects of our strokes. This is true of our unseen deficits as well.

 

When I go to a new doctor and I mention my two strokes, the most common comment is, "I can see that you don't have any deficits."

 

That's good, right? But my first reaction is to relate some of the ways I'm afflicted. I've worked hard to cover up my deficits. But, if they aren't recognized, I feel slighted. Does that make any sense?

 

Having survived a stroke or strokes is a monumental feat. Not only have we survived, we have pushed through the challenges. Whether the residuals of the strokes can be plainly seen or not, they non-the-less require continuing effort to overcome.

 

I think the thing that bothers me the most is the supposition that my stroke related problems were all physical, that snap judgments from people who don't know me.

 

We adapt:

 

My right side weakness causes me to walk with an effort. Depending on my level of fatigue, I limp on that side, sometimes dragging my foot. I've used canes, walkers, even a scooter, to get around outside of my home. But my favorite help is my walking cane my husband Gary. When I walk with him, my right leg problem is scarcely noticeable.

 

I drink only with a straw -.even coffee. My lips on my right side leak and I have trouble controlling the amount of liquid that I take in. My tongue gets in the way when I chew food and I consistently bite the right side of my tongue.

 

My speech has been affected. Depending on how tired I am. My speech has improved a lot. My words slur and my voice gets very soft. I labor to get past it, consciously talking louder and more deliberately enunciating my words.

 

Another related problem is understanding what people are saying, especially over the phone. Using our answering machine is humbling for me. I sometimes need to replay a message five or six or more times just to write down a phone number.

 

Many of those of hidden disabilities fall under the broad category of Executive dysfunction, which can include: difficulty planning, organizing, and performing complex behaviors. Planning, integrating various actions, and judgment are affected. When presented with too many choices, I'm not able to come to a decision.

 

My brain no longer processes information in the same way. My ability to research, correlate, and put together information has been greatly affected. It's difficult to stay focused on any task.

 

It is difficult to planning a meal, getting all the various parts put together so that everything is ready at the same time. Working with a recipe is another example of the way this deficit works.

 

A disconnect in social situations:

 

Right hemisphere stroke has affected my social awareness. It manifests itself in the inability to recognize or respond appropriately to social cues. Our social interactions are complex and too important to give this subject a passing mention so I'll tackle this topic in a future column.

 

Time awareness:

 

Lack of time awareness is also a result of right hemisphere damage. I find it difficult to keep track of time, not only clock time (minutes and hours) but days, weeks, and months. It feels like time is flying by without my being aware of its passing.

 

One of the things that helps keep track of my time is our calendar. We record every important thing. Before I became used to the calendar, I sometimes forgot an appointment, arriving a week late, or even early.

 

Fine Motor Skills:

 

I'm right handed. The strength in my right arm and hand is fine, but when I hold a fork or spoon, my hand shakes.

 

I also fight with the mouse or touch pad on my computer. Sometimes, the tremors in my right hand cause involuntary spasms that make it hard to put the cursor in the correct place.

 

Poor impulse control:

 

I also have poor impulse control. As an example: a few weeks ago, I wrote my article on pain and I needed some resource material. Instead of going to our local library to get what I needed, I went online and purchased six books about chronic pain.

 

Personality changes:

 

There has been a change in my brain's ability to self-monitor. This is due to a stroke-caused change in my brain called disinhibitation.

 

 

The above deficits are only some of the possible effects of stroke. Each survivor is unique and so are our deficits.

 

Even now, almost four years post-strokes, there are still things in me that are being knit back together. Often I don't even notice the subtle changes, but my husband, being my caretaker, sees the improvements I've made and encourages me.

 

 

In his book "Stroke and the Family," Dr. Joel Stein takes several chapters, giving detailed information on various aspects of the physical, mental, and personality of stroke-caused deficits.

 

Read more about the book and order

 

Read Stroke Network's review of this book 

 


Email comments or suggestions to. lmouat@strokenet.biz.


Copyright May 2008

The Stroke Network, Inc.

P.O. Box 492 Abingdon, Maryland 21009

All rights reserved.